Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Has anyone exercised extreme or very strict pacing over a long period of time (minimum 6 months)? It would be interesting to know about your experiences; good and bad, side effects etc.
Do you have a heart rate monitor? It is invaluable for pacing as you can see when you hit your anaerobic threshold and know to "stop right now."
Some here have done extreme pacing with good success. It seems to--in the long run--allow you do do more.
Best wishes,
Sushi
I would love some more info or a link on hot to use the heart rate monitor to my benefit? Is there a general heart rate to stop at or do you have to find yr own?
My experience isn't beneficial as I only extreme pace when I have a crash or when I have to do something like go to the Dr. I have seen some clips on youtube about the nature of us resting and how for some listening to music or watching telly is not resting. Apparently it is beneficial to do absolutely nothing for months on end - my personality can't cope with the idea!
I've started using a finger pulse oximeter to pace, and so far it's been very helpful....
I seem to do a lot better if I avoid any extra activities when my heart rate is over 90 or so. If I'm under 90, then I'm pretty safe to be mildly active for 5 minutes or so at a time (making dinner, watering plants, etc) with appropriate rests. If I do stuff when it's already high, then it stays high for longer - sometimes for days.
After several days of sticking to it and keeping my heart rate low, I do tend to feel better. Almost healthy or something, which can be a bit weird
I listened to Dr. Bateman's most recent webinar on post-exertional malaise and she said you should only do activities that you can recover from by the following day. If it takes you more than one night of rest to recover from an activity, you have over-exerted yourself. You can do this by trial-and-error or use something a bit more concrete like the heart-rate monitor or maybe use both methods together.
Here's the link to Dr. Bateman's webinar:
It's research-oriented, but there are some practical applications.
If I recall correctly, Dr. Bateman's definition of rest was lying flat, eyes closed, and no distractions such as music or television. She did give some examples of patients who would plan 15 minutes of activity, then 15 minutes of rest, and so on. She showed an example of one patient who was dedicated to pacing and I believe their gene expression after exercise was better controlled than those who hadn't practiced pacing.
Maybe what you call "extreme pacing" is what we used to call ART or aggressive rest therapy way back in the 80's?
To get over a particularly bad slump one would do as little physical activity as possible. This led to less viral symptoms and less PEM for me. Not much of a life, one did little but better than deteriorating further. ART helped me recover from a terrible bout of flus one year that went on and on. I was able to get back to my pre-flus level eventually through resting.
15mins of activity to 15 mins of rest.. causes me a crash within a few hours. For each 15mins of activity Ive done, I need 30-45mins of rest to recover from that activity. I dont think anyone should be setting specific ratios of rest/activity as we are all different and some may have more mito dysfunction going on and need more rest time then another. We all need to work out what our ratio needs to be.
That was an example Dr. Bateman used to give patients an idea of how to pace themselves. She also gave the example of 15 minutes activity and 30 minutes of rest. I think she had in mind that patients needed to work out their own ratios. For full recommendations from Dr. Bateman, I would watch her video, which is 1 hour and 20 minutes long. (Yawn, I know!)
What I mean by extreeme pacing is pacing that completely prevents PEM. I didn't know about the term ART but it's more or less what I tried to express.I too wonder what you mean by "extreme pacing" Pacing if done properly should be done quite strictly anyway if one wants it to be working well. I too wonder if you are reather refering to ART?
What caused you to fall out from full remission?It was due to ART that i ended up having a full remission for 2-3 years. I used this to help my body heal to a normal state of being again. Full remissions arent common with ME so I guess my experience shows just how helpful ART can be.
Here is another example of how to do pacing. It's called the 70 %-rule, I learned it from my me/cfs clinic. Basically, at any given time, you should only use 70% of your total energy. This will give you a good margin that hopefully will prevent any setbacks/PEM. The tricky part is how to know how much energy an acitivity consumes. My personal guideline is that an acitivity that consumes 70% energy or less should always feel fairly comfortable and you can do the activity with great ease.It isnt easy to do ART.. not easy to enforce yourself to bed rest more then your body is calling for at the time, to make sure you arent overdoing things. eg if you feel like you need 1hr in bed, spend 1.5hrs in bed instead is an example of how ART could be used. Over time, its like the excess energy builds up (rather then getting out of bed and quickly burning this energy) and ones health can get better and better. (well at least it was how it was for me).
It's the same for me, activity is my bodies worst enemy. I'm ok with getting around in my apartment, however, I don't get any benefit from taking a walk and similar activities. I feel like my body is like a locked bike. You can drag a locked bike but it's not good for the bike and the longer you drag the bike the greater damage you cause.Of cause this brings a risk of developing things like POTS and deconditioning due to being in bed so much while using ART so could work against some but in my own case activity is my bodies worst thing and it is that which causes my ME to crash or have its wide range of symptoms flaring.
What caused you to fall out from full remission?
Here is another example of how to do pacing. It's called the 70 %-rule, I learned it from my me/cfs clinic. Basically, at any given time, you should only use 70% of your total energy. This will give you a good margin that hopefully will prevent any setbacks/PEM. The tricky part is how to know how much energy an acitivity consumes. My personal guideline is that an acitivity that consumes 70% energy or less should always feel fairly comfortable and you can do the activity with great ease.
t's the same for me, activity is my bodies worst enemy. I'm ok with getting around in my apartment, however, I don't get any benefit from taking a walk and similar activities. I feel like my body is like a locked bike. You can drag a locked bike but it's not good for the bike and the longer you drag the bike the greater damage you cause.